Healthcare News & Insights

Study: Patients worried about privacy of HIEs

Many healthcare providers are using health information exchanges to share data between organizations and improve overall care. But how do patients feel about their data being stored in an HIE? 

The majority of people are supportive of those exchanges, but they’re concerned about privacy and would like to see some additional safeguards put in place, according to a recent study published in the Annals of Family Medicine.

Researchers from Weill Cornell Medical College surveyed 170 people in New York, a state in which patients must consent to have their data accessed through a health information exchange.

The good news: Most patients trust their healthcare providers, and to a lesser degree, other healthcare organizations, to hold and share electronic copies of their health information. The majority (67%) would be OK with their data being automatically stored in an HIE. Most (79%) of respondents were comfortable with the idea of their data being stored at their healthcare provider’s office, while 68% approved of the information being held in a central database.

However, patients do want control over what is done with their data. The majority of respondents wanted some kind of protection against their information being misused or falling into the wrong hands.

Specifically, patients said they want:

  • Safeguards against the unauthorized viewing of their information (86%)
  • The ability to see who has viewed their information (86%)
  • The ability to stop the electronic storage of their own health information (84%)
  • The ability to stop all viewing of electronic information (83%), and
  • Control over which parts of their health information can be shared (78%).

Survey respondents were especially concerned with certain groups being able to view the data in an HIE without permission. For example, just 35% said they’d be comfortable with their primary care physician accessing their data without getting permission first. In addition, 70% said they would never allow the government to view their health information, and 61% wouldn’t allow their employers to see their data.

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